Compassion in the Dying Process

I was distressed to read an Associated Press article about the arrest of former president and medical director of Final Exit Network at the end of February in Georgia in a sting operation setup by the FBI.

I have great respect for the work of the Final Exit Network, an organization that educates terminally ill people about how to voluntarily end their own life. They also can provide a person who will accompany those who decide to terminate their lives WITHOUT ASSISTING THEM in that process beyond the educating role.

A few months ago, we had FEN medical director Larry Egbert (also arrested) lecturing at one of our forums. I sat in on the lecture and listened to what he had to say. I know friends of our congregation who participate in the Network so I wanted to hear first hand about their work.

I learned some valuable information about ending my own life were I terminally ill. Suffocation is one of the easiest ways to go I was surprised to learn. Why most of us would not think this is a good way to go is because if you hold your breath, it feels more and more unpleasant until you gasp for breath. What creates this feeling of distress is the buildup of carbon dioxide in the body. That increase sends out alarm bells in every direction in the body to DO something quick. That is why Final Exit recommends the use of breathing helium as a way to end life. Oxygen deprivation puts the person to sleep (think of a close, stuffy room). Breathing helium in and out expels the carbon dioxide canceling the feeling of distress

Goodwin talked about the protcol they meticulously follow to evaluate whether to work with a terminally ill patient or not (you can read more on their web site above). I was impressed with the care they take to choose cases that assist people who are in excruciating suffering and have only a short time to live. They assist a person to die with some modicum of dignity rather than agony that could traumatize their caregivers and their family.

The key element for me is allowing people to have the freedom to voluntarily determine how they die. As we’ve seen in Oregon, having such a law has actually prevented people from killing themselves. I know of a number of cases of people who wanted the means available. If they couldn’t bear the pain and suffering, they could take their own lives. When the time came, they chose NOT to use the means. Having the choice prevented them from fearfully ending their lives in anticipation of later suffering.

The big issue with people with dementia. Final Exit will only work with people who are in their right mind and can voluntarily flip the switch, swallow the pills or turn on the tank.

Another key element is not judging another’s pain. just because one person can “buck up” under enormous pain and not need assistance in dying, doesn’t mean another will be able to do it.

The whole system of dealing with the dying is somewhat hypocritical. I think the permission we currently give patients in hospitals to have generous amounts of morphine that depress breathing rates, allowing them to fill with fluid, could also be called assisted suicide, just at a slower rate. I worry there is an industry set up to care for elderly invalids that would be impacted if these terminally ill people could hasten their deaths.

I’m also sensitive to the Not Dead Yet movement. These are the severely disabled who could be expected to terminate their lives because WE can’t bear their suffering … or don’t want to pay for the support that helps them live quality lives. I encourage you to visit their site and get their side of the story.

You’ll be interested to read that I’m not interested myself in going this way. I’d like to be as aware as possible of the dying process till I take my last breath. My commitment to mindfulness and Buddhist meditation practice drives my interest in exploring the dying process in every detail.

My point here is just because that is what I want to do, I don’t want to force my choice on anyone else. I can’t know what it is like for another person to die and want to bring others as much comfort and ease and compassion as I can in the dying process. For some that may mean assisting them in hastening their death.

Look, death is certain. Whether it is a few days early or not in the grand scheme of things seems almost silly. For me, it is all about how to actualize love. In some cases, the best way to love someone is to help them die with dignity.

11 Responses

I’m the research analyst for Not Dead Yet, a group that you managed to severely mischaracterize. But that is a theme that runs throughout this essay of yours.

I am trying to figure out if you are truly ignorant of the publicly stated mission of the Final Exit Network or just deliberately deceiving people.

Instead of taking the word of Ted Goodwin and some of the people you know who might want to downplay certain aspects of their activities, you might have checked out the FEN website.

I won’t give the URL here, but in March of last year NY Times columnist Jane E. Brody did *her* research when she correctly characterized the group’s mission:

“Dr. Wanzer and Dr. Glenmullen devote a chapter to the use of helium, an especially rapid method of ending life promoted by the Final Exit Network. Like Compassion & Choices, which provides all kinds of help for people nearing the end of life, the network relies on trained volunteers, but it is limited to helping suffering individuals hasten their own deaths.

The network’s Exit Guide program accepts members with various incurable diseases that cause intolerable suffering. Members must be “cognitively functional,” “physically strong enough to perform the required tasks” and “able to procure” the needed items. Helium, when inhaled in place of oxygen, results in a loss of consciousness within a minute and heart stoppage in 15 minutes without causing the unpleasant sensation of air hunger, the authors reported.”

So the references you make throughout your article about FEN and the needs of the dying are fiction – at least in relation to FEN. FEN has always been *proud* of its willingness to “help” NONterminally ill people. In fact, there is another case being actively investigated in Arizona in which they allegedly “helped” someone – it involved a woman with no physical illnesses, but a long history of struggling with psychiatric issues. Either you didn’t know about that or chose not to share the information.

NDY does not endorse any “decriminalization” of assisted suicide or euthanasia – too many outright murders (unasked for killings of disabled people) get written off already as “mercy killings.” You’d know that if you actually took the trouble to read our site or our blog.

I generally feel a moral and ethical duty to actually know what and who I am defending. This doesn’t seem to be a feeling that you share, judging from the apparent lack of effort to fact-check anything in what you’ve written here.

I apologize if I have mischaracterized NDY’s position. I did attend a lecture here a couple of years ago by Harriet McBryde Johnson and have done some research on the organization for a sermon I did a few years ago. What I wrote is what I though I heard discussed verbally but not what you have on your web site.

I stand corrected on the terminally ill designation. As you point out, the criteria they state is “You must have an incurable condition which causes intolerable suffering.” While that may be the most controversial cases they take, on the whole, most of the cases they deal with are of the terminally ill variety.

I will say I’m very impressed with the speed you found my blog and commented on it! I can assure you I am not a shill for FEN and am not a member. I’m also impressed with the ferocity of your attack of my blog to attempt to undermine my credibility.

FWIW, that’s much better than the response of Time magazine, which published a news article with the same kind of misinformation about FEN. No retraction, correction or response. Kind of like dealing with the Bush administration.

When you make the claim that “most of the cases” FEN handles involve the “terminally ill” you’re making a claim you cannot substantiate – I can’t make any claims either about percentages, either.

How can you put that forward as a statement of fact? I doubt that even Goodwin knows for sure what all his members are doing in the course of their “aid” in suicides.

As for my speed, it’s my job to try to track things down pertaining to my work – even at a time when I’d rather be watching the stuff I’ve got saved on DVR.

As for ferocity and “attack on your credibility” – didn’t we already establish that your online sermon was built on faulty assertions?

There are some serious issues that could be debated as a result of FEN’s activities coming to public notice.

Is “perceived quality of life” valid as the sole criterion for a “rational” suicide?

Is social rejection a reason for getting “assistance?” – the man in Atlanta was cancer-free, but was upset with his appearance from face and neck surgeries.

Has this been the aim of the pro assisted suicide/euthanasia movement all along? Were the narrowly-defined legislation efforts in Oregon and Washington just a door-opening strategy? (also known as a “slippery slope” strategy)

Lots of good questions for public debate. But it doesn’t look like anyone’s up to it. And that sigh of relief you hear is coming from organizations like Compassion & Choices, who are happy to see how many people are mangling the basic facts in this story.

May I suggest some reading for you since rather than take in the fact that FEN’s “clients” are not “terminally ill” you instead chose to take umbrage with how the facts were presented to you instead? Up to you of course if you want to read it or not, but it could be helpful at some point, we all have to deal with these issues every day in my opinion in our efforts to be ethical people and we all fall short at times.http://kspope.com/apologies.php

I have been a reluctant party to a death via Final Exit. It was tainted with coercion from family and the Final Exit organization. I’m convinced that the leftover problems with that death were a significant factor in another suicide in the family a year later. I think your stand in general and your support of this organization is worth a second thought.

I can see from all these posts that there is more to the Final Exit Network than I knew about from the presentation and the people I know who are involved.

Stephen Drake asks great questions and I’ll have to take them on another day – but with lots of research to back up my positions!

Yes, I am very interested in the public debate. As a former member of the Hemlock Society when I lived in Florida, I’m very aware of lots of elderly who want this as an option who have populated my congregations.

Right or wrong, the issue isn’t going away with the growing elderly population.

You identified yourself as a former member of Hemlock. Were you unaware that Hemlock advocated a broader agenda than “Oregon-type” laws? Back in the late 1990s, Faye Girsh, in her role as Ex. Dir. of Hemlock, issued a press release advocating the idea of a new criminal charge – “compassionate homicide” – with lesser penalties for family members who claimed to have killed a love one out of compassion. (Not just any relative, of course – the relative would have to be old, ill or disabled.)

Part of the schism that sparked the creation of FEN was the embracing of the incrementalist approach to assisted suicide laws adopted by the newly-formed “Compassion & Choices.”

I/m confused. If someone is old and not incapacitated and wants to die, why do they need FEN to kill or assist them? (And remember the investigation is leading to conclusions that they may have done far more than “assist” as in not make it possible for the person to change their mind by holding their hands down which is murder.) We have no law against self-suicide nor attempted self-suicide even in Virginia. And we have a sad number of suicides each year of older folks, mostly men, who use a gun on themselves and die right away and younger folks who are in crisis who do the same thing or use other sure to succeed methods I won’t go into here in our state. None of these people needed any help to do what they did. So what exactly are you supporting or debating here? A right to kill yourself in front of people? (I happen to know about the awful consequences of that for some survivors in non FEN situations.) A right to be love-bombed (term from studies of cults in the U.S.) until you die but not if you don’t want to die?

I suspect a lot of folks fear old age a lot more when they are young than when they actually get there. I have seen that in many folks–they say when they are young “shoot me if I ever get like that’ and then they “get like that” and they have adjusted over time and are not unhappy nor desperate and enjoy the natural life they have left.

Yes, we are all getting older, so is your suggestion that what we do about that is make it easier for older people to die than to live? Aging in place, home supports, companion programs, all kinds of programs and simple humanity and community can make a huge difference in someone’s outlook on their life but instead of looking for ways to make people want to live, you are looking at how to make it easier for them to die. I just don’t understand that. Maybe I am dense.

Thanks for your comments Alison. Yes you are right that there are many ways to commit suicide available to those who would like to use them. People have the right to refuse a feeding tube for example and starve themselves to death for example.

Not all suicide techniques are equal. I for one wouldn’t want to blow my brains all over my house and traumatize my family by making them discover my body and then having to clean up the mess I’ve made. Nor would I want to do it in my backyard and traumatize my neighbors who might discover my body. Jumping off a bridge could upset those who watch me do it. Suicide by cop is one of the worst ways to go in terms of causing suffering to others.

All I’m saying is choosing to end one’s life has consequences for others, particularly one’s family and loved ones. They deserve to be involved in the process and have the opportunity to register their feelings about it.

As I’ve argued so far, I strongly support people having self determination about living or dying. And, I agree that people should be encouraged to consider that they can be severely disabled (as often happens in the aging process) and have a good quality of life. We SHOULD do all we can to support people who do want to live. WE SHOULD make sure people have carefully considered their options and their quality of life opportunities AND get treatment for depression.

And there are cases of extreme suffering where the quality of life is not acceptable to the person and they want to die.

I don’t want to extend that person’s agony to meet my personal agenda of what I consider to be a good life or a good death. For me, that is what is at stake.

We should all have the right to choose a medically assisted death when the time comes. This is not “assisted suicide.” Suicide is the untimely taking of one’s own life. On the other hand, death is part of our biology. There is a time for each of us when death is near and inevitable. It is the final, most intimate experience we have, and each of us should have the right to make it as painless, dignified and easy as possible.

As citizens, we can and should discuss when the right time is and make distinctions about what situations are and are not appropriate for a medically assisted death. Right now, New York State deprives each of us of this fundamental right. It’s time that we reexamine the law and develop a responsible approach, such as the one used in Oregon, which allows medically assisted dying when the time comes.

Note: The Times Union is not responsible for posts and comments written by non-staff members.